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Table 2 Information About You

From: Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study

Information About You
Self-reported Demographic Frequency Ages 2–4 % Frequency Ages 5–18 % Frequency Age 19+ % Total
N
Male 12/27 44.4% 33/64 51.6% 44/197 22.3% 288
Race - White 25/27 93.6% 57/64 89.0% 189/196 96.4% 287
Diagnosis/Type confirmed by skin biopsy or DNA analysis 17/27 63.0% 29/64 45.3% 32/168 19.0% 259
Diagnosis based on clinical history and radiographs 10/27 37.0% 35/64 54.7% 136/168 80.9% 259
Family History of OI 3/27 11.1% 15/65 23.1% 117/197 59.4% 289
Walks unaided 15/26 55.6% 39/66 59.1% 107/197 54.3% 289
Uses manual or power wheelchair 3/26 11.1% 21/66 31.8% 54/197 27.4% 289
History of fractures at birth 14/27 51.9% 22/65 33.8% 46/195 23.6% 287
History of rodding surgery 10/27 37.0% 34/66 51.5% 82/185 44.3% 278
History of spine surgery 0/27 0% 6/66 9.1% 31/194 16.0% 287
History of recurrent breathing issues 5/27 18.5% 15/66 22.7% 56/196 28.6% 289
History of hearing loss 0/27 0% 8/66 12.1% 73/197 37.1% 290
Uses a hearing aid (if reported hearing) NA NA 1/8 12.5% 46/101 45.5% 109
History of Pregnancy (women only) 0/15 0% 0/31 0% 79/151 46.7% 197
History of Treatment for Anxiety 1/27 3.7% 7/64 10.9% 58/190 30.5% 281
History of Treatment for Depression 0/27 0% 3/64 4.7% 59/189 31.2% 280
History of Treatment for Fatigue 1/27 3.7% 2/60 3.3% 21/181 11.6% 268
History of Treatment for Pain 11/27 40.7% 33/64 51.6% 117/191 61.3% 282
History of Treatment for Sleep-Related issues 3/27 11.1% 8/61 13.1% 57/183 31.1% 271